This Is What It’s Like To Live With Trichotillomania

When I was 9 years old, I came home from school one day and noticed a look of complete shock on my parents’ faces. Throughout the day, without paying attention, I had pulled out almost all of my eyelashes and patches of my eyebrows. At the time, I don’t know if I even realized what I had done. I don’t even think I had looked in the mirror yet—but their reaction really concerned me.

Advertisement - Continue Reading Below

They took me to the doctor, and eventually I was diagnosed with trichotillomania—a chronic impulse control disorder that affects approximately 2 percent of adults and adolescents, according to Mental Health America. It’s most commonly characterized by the uncontrollable urge to pull out one’s hair, and is more often diagnosed in females. For me, it comes in waves: Sometimes I have periods of more intense pulling, and other times there’s none at all. There have been times where my eyelashes will have nearly grown back in only to have the impulse rear its ugly head again—so I pull.

Doctors say that people with trichotillomania often want to pull hair out of anxiety or boredom, overstimulation or under-stimulation, or because they feel uncomfortable. For me, it most often happened when I was studying, reading, or doing schoolwork. Regardless of the reason, though, one thing was clear: Instead of working through my feelings in a healthy, productive way, pulling was a coping mechanism I used until the uncomfortable thoughts and feelings subsided.

Unfortunately, there isn’t a known medical treatment for trichotillomania. In fact, when I first went to the primary care doctor he hadn’t even heard of it. So instead of pills and prescriptions, my treatment focuses on establishing more productive, healthy coping mechanisms. Things like cognitive behavioral therapy, mindfulness, and exercise are all a regular part of my routine. And I’ve found that it’s important to be aware of my hair-pulling triggers, like reading a book, watching TV, or being too up-close in the mirror. That way, when I’m in a situation that can potentially make me want to pull, I can use one of my coping techniques to hopefully reduce the amount I pull or prevent me from doing it altogether. (Tone up and beat stress with Rodale's new With Yoga DVD.)

Life With A Hair-Pulling Disorder

Growing up with a hair-pulling disorder wasn’t easy. Other kids could be mean, making fun of me and saying awful things about my hair-pulling. Schoolwork, like reading and studying, were triggers, so I’d sometimes find myself pulling in front of people without realizing it—which obviously caused some commotion among my peers. People often wondered how I could pull without noticing, but it’s like this: If you’ve ever been so focused on a TV show or lost in a thought that you lose connection with what’s going on around you, that’s what hair-pulling is like because of my trichotillomania. I can feel the pulling, but it feels good—kind of like a release—so it becomes a part of the background noise.

But I did have a close-knit group of friends, and aside from the shame that came from having a hair-pulling disorder, considered myself to be outgoing and sociable. I just worried that the trichotillomania would embarrass me. If I went to the pool, I wondered if the eyeliner I used to fill in my bare eyebrows had washed away in the water. And when I was interested in someone romantically, I struggled with whether or not I should tell them about my disorder. More often than not, I opted not to, and the stress of keeping it covered was often worse than just sharing my secret. After awhile, I realized that if someone couldn’t love and accept me with my disorder, then it wasn’t meant to be.

Josie Sanctis

Finding My Advocacy Calling

By 2012, I'd had enough of this disorder. I didn’t have a support group and I wasn’t connected with anyone else who had the same condition as I did—much less anyone who understood why I felt the urge to pull. So when I stumbled across the TLC Foundation for Body-Focused Repetitive Behaviors, I was blown away by the community. Finally, there were people out there who were struggling with the same thing that I was!

I instantly felt connected to the people I met at TLC and to the organization itself. I wanted to help build awareness for my disorder, and connect with others who, like me, had spent too much time feeling like they were struggling alone. So in October 2012, I competed in the Mrs. North Carolina pageant. I used TLC’s mission—to provide support and connection for people living with hair-pulling and skin-picking disorders—as my platform.

Even though I had never competed in pageants before, I felt like this could be a great way to get the word out about trichotillomania. I ended up winning, which felt so ironic because for so many years there wasn’t anything about my disorder that made me feel beautiful. To me, this victory helped shine a light on my condition in a whole new way. I realized that I could use it to help, not hide.

Since the pageant, I’ve been running a local support group in Charlotte, North Carolina, and I’m a board member for TLC. What started as one person showing up to my support group four years ago has grown into 115 people in a close-knit community. For whatever reason, our brains are wired the same way, and it’s such a special thing to be able to meet and talk about our similar struggles and support one another through tough times.

Advertisement - Continue Reading Below

Josie Sanctis

Seeing Past the Trichotilomania

Recently, I was able to grow out most of my eyebrows and eyelashes for the first time in about a year. While I hoped that they’d be here to stay, I knew that down the line I’d go through another period of pulling—which came a couple months later. So I’ve learned to enjoy it while it lasts. Through a lot of therapy, religious reflection, and changing my perspective, I’ve come to accept the fact that I have a hair-pulling disorder. But rather than beat myself up every time I pull, I’ve learned to give myself a lot of grace and love who I am in spite of my condition. I’ve decided that I can do a lot of good for people with trichotillomania, especially the young girls who feel silenced by shame.

At the end of the day, trichotillomania isn’t the only thing that defines me. Yes, it’s a big part of my life and it affects me on a daily basis, but I’m still able to live a very productive, healthy life in spite of it. I’m married, I have a beautiful 2-year-old, and when I’m not working, I’m an advocate in my community. I love to play tennis and spend time with my family, and we will be welcoming our second little one in April. There’s so much more to me than hair-pulling, and I want everyone living with this disorder to know there is hope, and they’re not alone.

If you or someone you know is struggling with trichotillomania or another body-focused repetitive behavior, reach out to TLC for more information about finding a support group near you.

A Part of Hearst Digital Media
Women's Health participates in various affiliate marketing programs, which means we may get paid commissions on editorially chosen products purchased through our links to retailer sites.